Wednesday, February 27, 2013
As I mentioned in previous posts poor Max has recovered from 2 stomach flus, his appendix out, and one typical flu. Mimi , has upped the anti, with her til 1am feedings.
I reached an exhaustion point this weekend. I needed about 3 days of sleep. I caught up a bit, but left the house today, only to nearly fall asleep on the way home.
It feels like we have been to the doctor at least 3x a week since January.
and not just ho-hum typical kid appts.
we're talking the very stressful, genetic appt, genetic testing, surgery follow-ups, weight checks, a "does he need to go to ER?" appt, a "does SHE need to go to the ER?" appt, and on an on.
I've also had it with the casual comments from folks about poor Mimi's height and slimness as well as the array of comments from all angles. From the "oh she's fine" from a neighbor, to the "SHE IS NOT GAINING!" from a specialist. It's killing me a bit. It is feeling like EVERY where we go there are comments, and almost every conversation I have frustrates me in some manner and at this point just confuses me or stops me in my tracks.
For example, if I tell a therapist she is up til 1am eating, they will ask me 10 minutes later if her next appt can be at 9am. I then have to explain that I'm not kidding, she is UP until 1am. And especially because she is Failure to Thrive, she both needs to sleep 8 hours and then immediately eat. So if you are to arrive at 9am, she would not have gotten eight hours of sleep, nor will she have eaten. Take this kind of conversation and multiple it times three or four and that is my day.
I hope we have a diagnosis soon. The Russell Silver Syndrome handbook arrived. If she has that, I've got a very large manual to dissect. If not, the investigations continue, if I can sit at the computer without falling asleep.xx